That Time I Blogged for 26 Days From A-Z for Autism Awareness Month

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son standing in fountain In honor of Autism Awareness month in April of last year I started a project to raise my own awareness on my small little corner of Facebook by lettering each day A-Z and sharing a little bit what autism is and what autism isn’t.

I have two beautiful boys both on the spectrum. They couldn’t be any more different, and while each have their unique challenges, they also each have their unique strengths.

Initially, without telling too much, I shared how things might look a little behind closed doors along with a personal photo to my friends who might not otherwise get that glimpse. But as the days in April passed and I became more comfortable with the safety of Facebook, a change took place with my friends on my page. Instead of the usual 20 or so likes I would get per post, I started getting hundreds. I also started to understand that perhaps the wrong kind of awareness exists. Friends and colleagues began to approach me to let me know just that, and thanked me for my efforts. Acquaintances stopped me to ask questions. I had others quietly ask me for advice since they weren’t “out” yet with their concerns about their child. Others even reached out to offer help in some way.

Somewhere around “K” in the A-Z tale, my husband, who is a wildly private person, changed as well. He too was being stopped by supportive members our community. He had a change of heart. For the first time, he let me know that he was proud of us as a family and that he believed I was changing for the better through the process of writing. I had not changed. I finally felt I had permission to be open. The more he saw he could trust that I would still protect some of the more personal aspects of our life while still being honest, the more open and honest I could become. The process was cathartic for both of us. 

I asked my 12-year-old to read and approve every post or blog pertaining to him. My slow-to-warm, seemingly uninvested Aspie now looks forward to reading my writing and even asked to attend a large and lengthy public speaking engagement where I will be presenting.

Though I started with something on April 1… 26 days later I ended with something else.

April is Autism Awareness Month. In our world where every day is Autism Awareness Month. I erroneously thought “we don’t need any more awareness… unless you have not interacted with the world at all in the last 10 years, everyone has heard of autism… everyone knows someone with autism… enough already with the awareness…”

But I’ve found, most people who don’t really know someone with autism don’t understand it, even though they thought they did, and they certainly don’t hop on autism awareness blogs to understand more. I don’t fault them for that. I would not either. I am a mother of two beautiful boys. Though their autism defines them about as much as their big brown eyes, this projection that we are just like every other family makes everyone around us more comfortable but ultimately becomes the elephant in the room. Not just for those who want to ask questions around my silent insistence things are “just the way they are” but by letting my kids think they are just like everyone else… when they are well aware they are not, leaving them wondering why their feelings are incongruent with the reality we try to portray.

So this year I once again started one more blog A-Z. It’s not everyone’s journey in autism, but it is ours, and it has been healing for all of us to say it out loud.

Follow this journey on Running Through Water.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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The Moment I Realized I Was on the Autism Spectrum

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At some point in every autistic’s journey — OK, maybe not those who were diagnosed from a very young age, but rather those who flew under the radar for a long time — we can have certain “light bulb” moments that lead us to presume we’re on the spectrum. Maybe it’s the fact we’ve always been a little bit “different.” Perhaps we have become more aware of social struggles as time goes on. Whatever the case, I’d like to talk about my personal experience.

I didn’t first hear of Asperger’s until I was 22 and in my second to last year of college, when I’d learned of students’ kids who had it. Other than the fact it sounded an awful lot like “asparagus” to me, I didn’t give it much thought. I knew it was a part of the autism spectrum, but that was about all I knew. I had the common misconception that it meant one was “in their own world,” as that’s what I had been fed by the world.

Fast-forward about four years. I was working as a supported housing specialist for the same agency I currently work for. I had always known I was “different,” but I had attributed it to the fact that I was diagnosed with ADHD at 25. Something still seemed to set me apart from others though. My literal thinking. The fact I couldn’t read between the lines. I had this genuineness and innocence about me. Jokes often went right over my head.

I don’t recall how it happened, but I somehow stumbled upon a blog by a girl with Asperger’s. As I read her story, I had that “light bulb” moment and thought, “Wow, I could have written this!” The author talked about her sensory experiences. I had always had sensory sensitivities for as long as I could remember. She talked about other things which I could totally relate to as well.

Taking what I now knew, I began to research Asperger’s. After taking online quizzes and looking at lists of female traits, I was convinced that I, too, was an Aspie! I spent the next five years involved in the community and made several friends in Facebook communities. Though nothing was set in stone, I learned that it was OK to self-identify until I got the answers I was looking for.

When it finally became official, on March 19, 2014, the first thing I felt appropriate to do was to share my story with the world! The pieces of the puzzle finally fit together, hence the name of my blog, “The Pieces Fit!” I had validation. My suspicions were confirmed.

Whether you have been suspecting for a long time that something is a little different about you, or you learn something later on that gives you an “aha!” moment, we all take different paths down the road to self-discovery. I believe it truly is one of the most rewarding experiences one can live!

Follow this journey on The Pieces Fit!

The Mighty is asking the following: Were you diagnosed with your disease, disability and/or mental illness as an adult? Tell us about the moment you finally got your diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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Our First Year With an Autism Diagnosis

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It’s only been a year. A year with therapy, meetings, tears, laughter, meltdowns and milestones. A year with an autism diagnosis. December 3, 2014 was a day our family changed; it was hard to conceptualize the enormity of how we were going to change in the 365 days to come. December 3, 2014 was a day that plays over and over in my head.

It started with Dr. B walking into our home and watching our 2-and-a-half-year-old run around from toy to toy, with a big smile on his face. He is a happy little guy. He smiles big, and his hugs can melt your heart over and over again. However it took her 45 short minutes of interacting with him to then just simply say…

“I feel comfortable diagnosing him on the spectrum.”

My stomach dropped; I looked at my husband, and he looked at me, but we quickly new better than to look at each other for too long because I saw it in his face that we were both going to breakdown.

I responded back with “OK.”

With that she smiled, and said, “Wow, you must have known because you don’t seem surprised.” I was shocked by that comment.

What’s a “normal” reaction to an autism diagnosis? I calmly responded with, “Well I don’t know you, and I can assure you I will cry the moment you walk out this door.” She talked a bit more, and I didn’t listen; I just wanted her out of my home. She was so calm and almost insulted by my non-reaction. Did she want me to cry and breakdown? She left. I cried.

My husband and I didn’t talk much that day. We met my family at our annual Christmas walk and dinner and took lovely photos, ate great food and had one too many glasses of wine. We didn’t tell anyone but my mom. I begged her not to tell my dad or anyone else. My husband and I needed time to really grasp the magnitude that was his diagnosis. We didn’t understand it, nor did I understand how to casually drop it into a conversation at the park with my mommy friends or on a playdate. What was I expecting from their reaction? Did I want one or not? Would they judge him? Would they judge me? So much anxiety would flood me when thinking about it to myself; I did not have it in me to talk about it with others.

After a few months we slowly started telling people. Telling my brother was hard, telling my best friend of more than 25 years was nerve-wracking. Watching my husband struggle to even say the word “autism” has been and still is extremely heartbreaking. I ended up writing a letter to my sister-in-law, and my husband called his parents after five long months of saying, “I will call them tomorrow.” The anxiety around autism conversations last year was constant and always on our minds.

It was an awkward first year. We didn’t know how to say it, we didn’t know how to act about it. I finally wrote a long and detailed email and sent it to grandparents, aunts, uncles, cousins and friends. It was exactly what I needed to say without everyone watching my eyes fill with tears and my voice become shaky. It took us nine long months to actually tell “our tribe.” We heard many different comments like, “The longer you hide it, the bigger of a deal it makes it,” and “Just tell people,” or “I wouldn’t tell anyone either,” “He’s so young, how do you really know?”

We were confused this year. We were dipping our toes into the shallow end, and thankfully we now feel comfortable to dive right in and tell anyone (when appropriate). It’s nice to be able to talk about autism and spread advocacy when I can.

 

I woke up this year on December 3, 2015 to Milo yelling in my ear, “Mom, please can I watch movie?” My first reaction was to say, “No, go back to bed!” It was still dark out. Then it hit me — a year ago we were struggling to communicate with him. He had very limited verbal communication, about nine words. A few months earlier his speech evaluation graded his age equivalency at only 9 months old. A year later — 365 days later — he is talking in full sentences, something I wasn’t sure he would ever do.

family photo

family photo

The amount of support he has gotten through his early diagnosis has truly been life-changing. Yes, one year ago I was angry at his diagnosis and that lady who so calmly walked into my house and told me he is on the autism spectrum. Today I have come to see it as the most crucial and beneficial day for my son and for our family. Without the 20-plus people working with my son, he wouldn’t be where he is today, and our family wouldn’t be the same. My husband and I have come to understand and love all the amazing people who have come into our lives because of his diagnosis. Most important, this year, we survived, thrived and are embracing our journey.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To Those Who Choose to Bully My Son With Autism

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Friday afternoon I put my jacket on and stopped halfway from my house to the bus stop like every other day. It’s my sons favorite thing to do. He asks me all the time to stop right there so he can run really hard and crash into my arms. He calls it his “Brock Entrance.”

I knew something was wrong the second he got off the bus. Brock didn’t run that day, but his smile wasn’t gone. He came right up to me and said “[blank] choked me on the bus today.”

My heart dropped. My breath caught.  My eyes started burning. I wanted to cry, but I couldn’t. I have to be strong for my child.

I put his hand in mine and walked to our house. I had him sit on the couch and tipped his head back. That’s when I noticed the faint purple marks and scratches under his chin. Inside my momma bear was slowly roaring to life; outside I was calm with my usual smile when I see my son after an eight-hour school day. I asked him, “What do you want for a snack today? Apples or big gooey chocolate donuts?” He picked the donuts, because you don’t exist in our house. Your memory fades when his foot hits that last step on the bus. You take up enough of his time outside of these walls  —  you don’t get more of him.

This is our time, and my time to remind and show him that love is a stronger feeling than hate. My son has autism and developmental disabilities, and he is so, so loved. He has a mom, dad, puppy, aunts, uncles, cousins, grandparents and friends who always make sure he feels that love the second we are in his presence.

But when I think of you, after the hurt and anger at the injustice you caused my son fades, I just feel sorry. There’s a big part of me that hurts for you, too. I can’t help but think of what you must be going through to have that much pain inside you’d take it out on my child. The child who always finds a reason to smile and sees the good in everyone.

Brock, Lindsay's son playing with a friend and smiling
Lindsay’s son, Brock.

I believe one of the best parts about being a mom is having the power to help take pain away from my son. I get to do that, and I am doing that. The most important thing I’ve learned if your child is a victim of bullying is to remind them they are in no way at fault, and to always let an adult know what’s going on. I always make sure to spend time after each school day discussing Brock’s day with him. I call it “the highs and lows.” I have him name a few things that were the high points, and a few things that were the low points, because I want him to know he can always come to me for anything good or bad. Whenever he names a low point, we discuss ways they can either be solved or improved. Communication is always key.

And now, he’s no longer going to be the person you take your frustrations out on. That ended Friday afternoon when he took that last step off the bus and chose gooey chocolate donuts.

Brock is going to go on like Brock does  — with a smile on his face and without a care in the world.

And I hope, beyond all hope, when the next Brock comes around, (because there will always be another Brock) that you remember one thing: in the long run, the only one you’re hurting is yourself.

Memories fade, but there will always be big gooey chocolate donuts to help pick up the pieces.

Follow this journey on Brock’s World.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Young Autistic Woman Reunites With Missing Disney Lanyard

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In late March, Disneyland staffer Emily Gibby took to social media to find the owner of a missing lanyard her coworker had found in the park in Anaheim, California.

The badge attached to the lanyard has a note which reads, “Hello! I am autistic, and I don’t talk much, but I would like to trade for Mickey pins!” Gibby posted a photo of the lanyard on her Facebook page, adding that she and her co-workers decorated it with even more pins and a medallion.

After thousands shared Gibby’s post, the lanyard was finally returned to its owner, a young woman named Susan. Disney also sent her a few goodies, including a Mickey Mouse doll, according to a comment her mother Deb Baldwin left on The Mighty’s original report.

Many individuals with autism have sensory issues and may grow very attached to certain objects, or parts of objects, according to The National Autistic Society.

“I have always known that people with autism have daily struggles that some of us will never realize, but recently I have learned that something as small as losing a possession could drastically change their day, week, or even their month,” Gibby wrote in a post on April 2. “Losing a small item could lead to large behavioral changes and meltdowns that can not be solved by just ‘buying a new one.’”

Upon finding the lanyard’s owner, Gibby thanked her Facebook friends for helping solve the mystery.

“I’m so happy to see so many people care about someone they have never met!” she wrote. “The world is still full of great people!”

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Superstore Asda Living Introduces 'Quiet Hour' for Customers on the Autism Spectrum

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A superstore in Manchester, England, will now offer a “quiet hour” for customers on the autism spectrum.

Starting Saturday, May 7 at 8 a.m., Asda Living will stop escalators and turn off in-store music and TV displays for an hour, Manchester Evening News reported. Loud noises, bright lights and/or crowded areas can be overwhelming for a person on the spectrum and possibly cause them to shut or melt down. Shoppers will also receive maps of the store that use images instead of words for a more visual navigation.

Simon Lea, the store’s manager, pursued the idea after watching a young customer experience sensory overload in the middle of the store. He asked a staff member who has an autistic child for advice in finding a way to help.

“It’s all about helping people, really,” Lea told Manchester Evening News. “Six months ago I would have said ‘control your child’ even though I’ve got children. But speaking to people with autism and disabled people has helped me think about how I can make it a better place to shop.”

An Asda spokesperson told BuzzFeed News the company will be “monitoring feedback from the trial, and will share information internally to see if [it] can be rolled out to other stores.

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